DJ An Aging Population Makes Alzheimer's a More Pressing Concern -- for Health Care and the Economy -- Barrons.com
When Covid-19 hit, Rosanne Corcoran went into lockdown mode, creating a cocoon around her family and dismissing the part-time paid caregiver who had helped her care for her mother, Rose, who has Alzheimer's. But for months, Rose has stayed up all night, leaving the 53-year-old Rosanne so sleep-deprived that her cardiologist recently counseled her to look past her fears about the virus and bring in help.
Rose was first diagnosed with mild cognitive impairment a decade ago. When, in 2015, doctors said she could no longer live independently, Corcoran put her Realtor license in escrow and brought Rose to live with her family outside of Philadelphia. The mother of two young adults snuck in a couple hours of normalcy to run errands, go to the chiropractor, or take a walk, with the help of a regular paid caregiver -- until Covid-19 hit. Doing without the additional help has taken its toll. "My mother has declined, and I've declined. It's an awful choice to have to make, but I'm going to, because I want to survive this," says Corcoran, who just rehired a caregiver for weekend help, despite the pandemic.
Families grappling with Alzheimer's often face awful choices, but it has been taken to new heights over the past year. Roughly a third of the 450,000 Covid deaths in the U.S. have been at long-term care facilities like nursing homes, where about half of the residents are living with Alzheimer's or some other form of dementia. Even those who have been safe from the virus have suffered; 70% of caregivers surveyed by UsAgainstAlzheimer's this past fall reported a decline in their loved ones' memory or behaviors. Residents in long-term care facilities have been isolated from relatives and friends who supplement their care, provide extra eyes that spot changes in health conditions, and tap into reservoirs of memories to keep them engaged, while unpaid caregivers like Rosanne have been cut off from support services.
The pandemic has cast a harsh light on the inadequacies of the U.S. caregiving system and the enormous emotional and economic burden on families -- and ultimately the economy -- bringing the fight against Alzheimer's to an inflection point. It comes as the oldest baby boomers enter the age range where Alzheimer's is often diagnosed, and against a backdrop where science could be on the cusp of sorely needed victories -- including the possibility of the first new drug approval in 18 years, and progress in biomarkers to enable earlier detection.
Alzheimer's is a progressive brain disease that is the most common cause of dementia. Of the top 10 causes of death globally, it's the only one that can't be cured, slowed down, or prevented, at least not yet. The disease manifests in different ways, with some patients living 20 years after diagnosis, though it's often closer to four to eight years. Although 80% of those with the disease are 75 or over, Alzheimer's typically emerges in midlife, 20 to 30 years before symptoms like memory loss or troubles with language appear.
With the world in the midst of an aging boom, the number of people living with Alzheimer's or some form of dementia is expected to triple by 2050 to 152 million -- a bit more than the population of Russia today. That is bringing recognition to the scale of the problem, with nonprofits, academics, businesses, and governments in January creating a global initiative, Davos Alzheimer's Collaborative, aimed at speeding up the global response to the disease, in part by using the road map offered by the discovery of Covid-19 vaccines.
"Alzheimer's is a disease of greater prevalence and greater lethality than Covid-19," says George Vradenburg, who co-founded the advocacy and research group UsAgainstAlzheimer's. "This is an ongoing pandemic. Its cost to America in terms of direct medical costs is significantly higher than cancer."
Cost estimates vary, but a 2020 paper in American Journal of Managed Care put the total health-care cost of the disease at $305 billion -- and projected it would hit $1 trillion by 2050. With few treatments available, most of the direct costs come from skilled nursing care, paid home health care, and hospice.
While some of this is covered by Medicaid for low-income Americans, most of it is not covered by Medicare, leaving families to foot the bill. The total lifetime cost of care for someone with dementia is estimated at $357,000 in 2019 dollars, according to the Alzheimer's Association. The bulk of those costs are borne by family caregivers, often in the form of unpaid caregiving -- not to mention the psychological and emotional toll.
For Stephanie Monroe, the uncertainty, confusion, and fear around her parents' care during the past year have been the worst experiences of her life. Amid spotty communications about Covid-19 outbreaks and protocols at her parents' Baltimore-area long-term care facility -- as well as signs that her father, who has Alzheimer's, was deteriorating as social activities like choir and mah-jongg were suspended -- Monroe, who retired from the federal government and now works on equity and access-related issues at UsAgainstAlzheimer's, has agonized over whether to find alternative arrangements for her parents. A move, though, would separate her parents from her aunt who lives in the community, as well as nearby church friends. "There's no good decision," Monroe says. "It's all about weighing the consequences, costs, and benefits -- and feeling guilty about any decision you make."
The costs can ripple through generations, and not just due to lost wages or time out of the workforce for caregivers. Studies show that spousal caregivers who report strain face a 63% higher mortality risk in four years than noncaregivers who are the same age. Smaller studies also found that some caregivers have compromised immune systems and increased need for medications, and have seen their own health-care costs increase in the aggregate by an estimated $9.7 billion. "The financial costs are underestimated. The emotional, psychological, and even physical costs are underestimated," says Amy Florian, CEO of Corgenius, which helps financial advisors navigate these issues with their clients. "It affects people in every respect."
Alzheimer's was recognized as the most common cause of dementia in 1976. In the 45 years since, progress in fighting the disease has been glacial, in part due to misperceptions about the disease that delayed funding and scientific research and created an inadequate care system in its early days.
"As a nation, we struggled to see the disease as a disease," says Dr. Jason Karlawish, co-director of the Penn Memory Center. For decades, culturally, Alzheimer's symptoms -- memory loss, confusion, or forgetting to pay bills -- were brushed aside as just the natural course of aging, and problems that could be handled by family, almost always wives and daughters, Karlawish says.
With limited funding in the first 20 years, research was restricted primarily to how a brain with Alzheimer's changed, rather than to the multifaceted pathways that contribute to the disease, the factors that influence a person's risk, and devising cutting-edge clinical trials. Research talent was lost to diseases attracting more investment, says Dr. Maria Carrillo, chief science officer at the Alzheimer's Association. Even today, much of what is currently available is short-term palliative therapies that don't address the underlying biology of the disease.
The complexity of the brain adds to the challenge. Because there isn't yet a solid understanding of why memory changes, the clinical trials for Alzheimer's take longer, often 18 to 24 months, because researchers need to see if the drugs move memory, rather than just look at underlying changes in the biology. Early trials were open to those who had a clinical Alzheimer's diagnosis. But now, trials include people with biomarkers like the amyloid plaques and tau tangles (both are forms of problematic protein deposits in the brain) that are now seen as hallmarks of Alzheimer's disease, and have been the target of many of the drugs in trial.
The past decade has brought change, partly due to the advocacy of organizations like the Alzheimer's Association and UsAgainstAlzheimer's. Funding for Alzheimer's and dementia research at the National Institutes of Health has increased to roughly $3 billion, about half of what is spent on cancer, but far higher than the $448 million allocated in 2011.
Drug development is also looking more promising; there are now more than 100 ongoing trials. More recent clinical trials for Biogen's much-anticipated aducanumab and Eli Lilly's antibody donanemab incorporated biomarker tests that earlier trials lacked. The near-term attention is on Biogen's monoclonal antibody aducanumab, which is awaiting a decision from the U.S. Food and Drug Administration, expected by June. It has been a bumpy road for the treatment, with an advisory panel of the FDA questioning the merits of aducanumab last fall.
If approved, even with conditions, experts on aging say it will serve as a signal and bring in a rush of investment. A lack of approval could have the opposite impact in the near term, but researchers note several other treatments on the horizon, including drugs from Roche's Genentech and Japan's Eisai. Even more encouraging is the diversification of treatments deeper in the pipelines that go beyond amyloid and tau tangles -- important because scientists think Alzheimer's will ultimately be treated much like heart disease, with a mix of therapies and interventions, or possibly a combination therapy.
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February 05, 2021 11:39 ET (16:39 GMT)
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